Posts Tagged ‘advocacy’

Well, the fringe festival is over so I am now going to reflect on this amazing experience.
Pre-fringe I sent out all the emails to all of the contacts that Fringe suggested, which was like 4 weeks ahead of time. I thought that everyone would be interested in my story because I am egotistical like that. I have a hard time taking the perspective of others, therefore, when things go badly its because of something I did and when things go well it’s because I got lucky. Nevertheless, in my head the world revolves around me. Therefore, when I did not hear back from anyone other than the Jewish post and Shaw at first I got really discouraged. (I still think the Jewish post, had the best article of the bunch =0 ). Maybe, I had miscalculated and it turned out no one would be interested in the message that I had to say. Maybe, only people with aspergers would care and everyone else would prefer something lighter. This was a stand-up comedy which is light, but also about a weighter topic Aspergers. My blog never had the biggest audience after all. Therefore, I began worrying that my fringe show would be a flop.
Slowly, however, three weeks after I had sent out all the emails, two weeks after I stopped thinking anyone cared and four days before the fringe festival started. I started hearing back from CBC and the Winnipeg Free Press. When CBC first contacted me I was in a hurry and had just woke up from my nap so wasn’t really coherent about what was going on. Therefore, when they interviewed me for the website I was just confused and thought that was that. Then they contacted me again to do a radio interview, at the radio interview they also talked about doing something for tv but when nothing happened that day I moved on. The television department actually contacted me the day before I was performing. On top of that I was still writing my fringe festival show because the original script was too darn negative.
My mom was still convincing me, however, that not everyone would be interested and only people impacted by the disorder would come to my show. On top of that people with Aspergers rarely like to leave their house so I thought my audience would be tiny.
In addition, I had got my tech time wrong and only out of mercy from the tech guy steve who waited late were we able to practice at all. I only knew, I got my tech time wrong because my mom called me on my cell-phone I had been out that day with some people putting up the great posters that Cory Falvo made for me.
The first night of my show I knew was going to be huge because it was all my parents friends who had read the article in the Jewish post and therefore, had come out to support me. Therefore, I figured I’d have at least one packed house and only one packed house. I was okay with that, because frankly I was not that comfortable with my material after writing and learning it all in a week. Granted it was based on my five years of stand-up comedy but everyone told me stand-up comedy doesn’t do so well in the fringe festival. Also, it wasn’t like I was on the pinnacle of Winnipeg stand-up and had already been looked past for many big shows like the Winnipeg Improv festival. As a result, I had every right to be concerned. Forunately, for me there were lots of people who came out to support me. My brother’s friends parents all the way-out in the country even drove in to support me that night.
The next day, was Friday. I was very nervous because my show started at 5:45 and my shift at work ended at 5:15. Forunately the two were very close to each other. Nevertheless, I was very nervous about not having lots of time to prepare, mentally that is, as my show had no props. I was flabbergasted when I got there and there was a huge line-up. The place had sold-out. The show is very strange for an audience member to know when to laugh because at the heart of it, the jokes are about something really sad therefore, it was hard for them to know when it was okay to laugh and not feel like they are laughing at the person with the disability. It is made tougher by my pedantic speech as a result of my disorder. I have faced this challenge often as a stand-up comedian and I didn’t know how this would fare for my show. This ended up not being that big of a problem. Nevertheless, I wasn’t thrilled with how my show went. My general awkwardness at the end of my worked in my favour, however, as the audience loved it. I wrote this off as a freak occurence and that my audience sizes would normalize for the rest of the shows. That my third show no way would anyone come out I mean it was at a god-awful hour of 11pm on a day that had been raining hard and was still coming down hard. Nevertheless, lo and behold this show almost sold-out as well. There were 5 seats still available.

I was a bit worried how, the critics would take it, however, as my show was barely 35 minutes at that time and I said it was a 42 minute show. One critic hated this and gave me a medicore review a 3. The other big critic, however, loved my show and gave me a 5 stars. Which is a miracle, since five star reviews should only be reserved for the best shows like the Hot Thespian Action one or Crumbs. You know, shows that would sell out automatically whether or not they got 5 stars.
After hearing both shows complain about my show being short. My brother and I stayed up late the Saturday before the Sunday show, my 3rd show, and worked really hard to add 5 more minutes. One of the jokes that came out of this session actually became one of my best jokes.
After getting the 5-star review I also got two super generous reviews from complete strangers in the Jenny’s which is the unofficial fringe newspaper. My shows now started selling out really quickly. I could only hope that the message that I was trying to send about people with Aspergers being just as capable and worthy as anyone else, despite having our shortcomings socially was getting through. One show sold out 5 minutes after tickets going on sale I’ve heard.
The final hurdle came after I won patron’s pick. I was going to be going up against the best shows from other venues in the exact same time-slot. Amazingly enough, the press and word of mouth was good enough that it was the only show that sold-out in advance.
The most rewarding part of the festival, however, was not selling out shows but having strangers who I did not know come up and talk about how they could relate to the show and how they too had Aspergers and appreciate what I had done. Some of them even shared their own stories.

In September, the show will air for one night only at the purple room as a fundraiser for Aspergers Manitoba.

Happy World Autism day. I bet some of you are just coming back from the big parade that happened downtown in your city. Filled with sugar from a little too much drinking of soda from all the celebrations. What is that? No parade? Yeah me neither. How come certain causes get their own parade and festival well others do not? Are the organizers afraid that no one would show-up if they did arrange a parade? That’s just silly, because apparently 1 in 88 people are on the Autistic spectrum. That means that there is plenty of people who should either be on it themselves or have close family or friends on it. There is no reason why there are not just the pure numbers to have a big celebration that rival that of the G/L/B/T parade every year.
Both communities have alot in common, for example both of them have been/are considered a form of illness for a long time. I mean, people actually think that a pill can take away all that I am and instead replace my social awkwardness with a brain that works like an NT’s. Sort of like the transformation that happened in Family Matters when Erkal becomes the sexy Stefan who is a complete babe magnet. Hey, if it’s possible why not. My lack of lacking a sex life would be a nice change for a couple of months/ years.
I get it Autism lacks the sexiness of homosexuality. There just is not the same marketability of it. There will never be the same desire for movies with two autistic people. You will never hear a conversation like this in the bar.

Stefanie: Hey, instead of making out on the bar like we do every week, to look sexy for guys let’s do something really different?
Trish: Like what Bitch?
Stef: You’re the Bitch, Bitch. Let’s act really Autistic won’t that be so sexy.
Trish: You’re so naughty. I love it. Let’s totally do it tonight.

There are certain stereotypes people have of people with Autism such as we have poor fine motor skills. It’s true, there is nothing that will ruin a date faster than having the person you are trying to woo have to tie your laces for you. Except, maybe asking them to buy you a hot chocolate at the end and calling them mom. Worst practice date ever, am I right?
(seriously, never happened but I did have to have my dad or mom come into the locker room growing up and was like 13 to tie my laces because I could not tie them tight enough. It was extremely emberassing. Once this was no longer acceptable, for awhile a teammate would do it or my coach. One of my former teammates always brings it up whenever he is trying to embarass me in a social setting because he knows I am not proud of it and he thinks that everyone will get a laugh at my expense. Fortunately, I don’t hangout with this guy often, who would if they were me?)

My life has definitely been interesting, I mean for a long time I was in denial of the fact that I was an Aspie. However, doing stand-up comedy made me feel like I could be a real force for educating people about Aspergers and that I was born with it for this specific purpose. After reading dozens of blogs, and seeing that there are in fact many more books written on the topic I am now questioning this role. I mean many of the blogs I have written are much more articulate than anything I could have written and if there are already several books on the topic than I am not exactly breaking ground, striding towards a new frontier and going where people with Aspergers have not gone before.

So where does that leave me, I mean there are few stand-up comedians with Aspergers so for the people who don’t read I do have an opportunity. For how long, I don’t know, because if there is one thing I have learnt about the Asperger community; it is that there is no barrier that they won’t eventually be able to overcome. Therefore, I have to take advantage of my brief window. My book deal that I envisioned coming from this blog may take awhile to happen and may not happen at all due to all the great writer/advocates on the topic. I may have to change the idea so that it is more about Aspergers from the perspective of a stand-up comedian than just Aspergers in general. The number of books coming out on the topic may in fact be a boon making people curious about the topic which comedy can cater to.
There is no way of predicting the trends, therefore, in the end all I can do is keep doing what I am doing.
Therefore, I begrudgingly say good luck to Jodi Carmichael the author of the new local Asperger book “Spaghetti is not a Finger Food”.

The Connecticut School Shooting if it was not sad enough takes on an extra tragic note for anyone who is on the Autistic Spectrum or cares about someone on the Autistic Spectrum. The shooter, Adam Lanza, turns out that he was believed to be on the autistic spectrum even though it was never officially diagnosed*. If it was, additional steps could have been taken to avert this crisis. Without a diagnosis, however, it is hard for someone who is on the autistic spectrum to get the proper treatment and if you read Life and Ink’s post about her son being prescribed drugs, even than the drugs can still have an adverse effect.
People on the Autistic Spectrum make up approximately 1% of the population so the chances are good that many people will not have had experience with anyone on it. Lack of information, means that other people (NT) who may have seen a person with Autism react badly by throwing an agitation, sensory overload tantrum and made a scene in a public place. Therefore, they may think that a person on the Autism Spectrum is a violent, unbalanced person who needs to be highly medicated.
They may not understand that people on the spectrum love rules, and most of us are huge rule-followers. They make life easier for us because it gives us a guide to act upon in a new situation as we do not generally do “on the fly” well. We don’t always get all the information, because of trouble reading body language and tone, therefore, rely on rules to guide us in new situations. This generally means that we are great citizens, however, anyone not knowing all of this, and not knowing anyone on the spectrum, and are predisposed to making rash judgements and decisions when they find out that the Columbia shooter, is believed to be on the autistic spectrum, from the news may think badly of the rest of us. One terrible incident like this, could undermine lots of hard-work to show people on the spectrum positively.

People with Aspergers often are afraid to follow their dreams and lets their condition hold them back. They fear that they are just not good enough and with all their extra challenges they will never succeed in the field that they choose so decide it is better to play it safe and stick in a job that they may not love.

They are afraid that everyone will laugh at them because of their awkwardness and therefore quit before seeing their projects through. “About 7 years ago, I took a workshop with a woman who used to write for SNL in the late 70′s, on sketch comedy. My aspieness created an awkward scene and I bailed on completing the workshop.” Ken Myers 43 year-old lawyer.

However, once we find the path that is right for us, we can’t let anything hold us back.

“For a long time I thought my awkwardness would make it impossible for me to be a good trial lawyer, but then I got in front of a jury for the first time, in a really big case, a year ago, and I was like Rain Man in a good way, totally zoned in on it, my boss said I found my calling. I don’t really agree with that, but the point was that aspieness does not hold us back from any particular field, IMHO, rather with our way of focusing (obsessing?) we can be brilliant in just about anything.”

We all need to find the dreams that work for us. Just like Ken Myers never became a sketch writer his unique skills that come with Aspergers allowed him to succeed in court. I may not become the most successful comedian but it is not because my Aspergers is holding me back. Like Ken says we can be brilliant in just about anything. It is just about finding the right field for us to succeed in. Often the only way of knowing that, however, is by failure letting us know that we are going down the wrong path.

People with Aspergers have succeeded in every creative field as well as in law and business. Others have also succeeded in engineering and mechanics like Jon Elder Robison, who is also a prestigious author. Granted, however, there will never be a great athlete with Aspergers it is not in our genes but we can nevertheless be successful in many other fields.

It can even be an advantage, “comedians NEED a difference so they can blast on stage about it. They need to be fat, ugly, black, female, short, whatever, and then they need to OWN it, and they can find the humor in it. Being aspie is not a hinderance, but a tool that can be very useful.” Anything, can be an advantage, if we see it in the right light.

Despite his setbacks Ken Myers has, also, not given up on his dream of being a writer. “One day, I may get my comedy out there in some public way, maybe write my own Douglas Adams type comedy novel“.

Even though, I may never meet Ken Myers, his comments filled with wisdom from his own life and the fact that he could relate and felt comfortable sharing his own story after reading my blogs are the reason why I blog in the first place. That and to become rich and famous =). Therefore, I would love for more people to send me their stories and share their comments on my blog.

To see the letter in its entirity its in the comment section of my blog about Z list celebrities.

A person whose blog I follow and respect tremendously addressed the question if there was a magical pill that could take autism/Aspergers away would she give it to her child. At first I was very insistent saying that I would take it in a second without giving it a second thought. There are many holes in my life which I blame my Aspergers for. For example, I don’t have the best social life, I am 27 and have never had a girlfriend or got intimate with a girl and I still live at home. On the outset who would argue with my decision from the outside it looks like a terrible life. However, if you take a bigger view of my life I have an incredible family, friends who care about me a great job and things that I am passionate about. If I were able to take away my Aspergers at this point in my life not much would change because I have grown into patterns and if there is going to be any serious intervention in someone’s life it has to happen when they are young. It is not something simple like avoiding alcohol for an alcoholic but it means changing the most basic way I interact with people and that kind of change is much harder.

So if I was a child again would I take it? I don’t really know is the truth. I am not going to say that having Aspergers is a blessing but I am not as convinced as I once was that it is a curse.They say that a butterfly flapping its wings can create natural disasters on the other side of the world and that you can’t know the immense effects on your life if you went back in time and made small adjustments. Getting rid of my Aspergers would be a major adjustment.

Therefore, I may be better at sports and be less socially awkward but I would also likely not have the same incredible relationship with my family. Part of the reason why I am so close with my family is probably because I did not have as many friends and therefore relied on them more than usual and my life would not be as rich without these relationships. I have an incredibly strong relationship with my siblings and parents who I love dearly. If I did not have Aspergers maybe I would not have appreciated as much having tea every night with my parents. Or have a private book club with my mom where we sit together and read our books. Through this I have been exposed to so many incredible books and have been as rich as a king by having these books at my fingertips and it makes me as happy as a bug in a rug.

If I was not so disorganized, my sister may not have had to develop as maternal instincts and alot of people would be poorer for it. My sister is great whenever someone new moves into their co-op housing she goes out of her way in order to befriend them and make their lives better. Would she have had this same level of compassion if she did not think of how cruel the world can be and saw how much I struggled? It’s most likely as she’s a really nice person, but you never know. It’s the same with my brother who has raised almost half a million dollars for women affected by aids in South Africa.

If I did not have Aspergers then I would not have this chance to try and be a spokesperson for the cause and try and make life better for other people with the same disability by raising awareness through my stand-up comedy and my blog. I also would not have as much material for my stand-up career. Not having enough material or even stand-up comedy alone is not a good enough reason to justify having Aspergers but I am happy about the spokesperon part.

Having had to work for everything has also helped me accomplish great things like achieving my masters degree instead of being lazy and slacking off. Lots of people who are neurologically normal, even from middle-class homes, end up drinking all the time and may never achieve anything worthwhile. I, however, enjoy drinking with my friends but also know the value of hard-work.

In the end I don’t know if my life would be the same if you took away my Aspergers or if it would be unrecognizable, and ultimately, the good in my life outweighs the bad.